Peter Staley is one of many AIDS activists who worked to fight the stigma surrounding the syndrome and demand from the government funding for research and treatment at a time when many in this country had written it off as exclusively a gay problem.

A former bond trader, Staley was inspired to join ACT UP after his mentor, the head trader at JPMorgan Chase, suggested that AIDS activists deserved to die. Despite being arrested 10 times, Staley’s prodigious understanding of AIDS data led him to a collaborative relationship with Merck as the pharmaceutical giant designed early trials for protease inhibitors. Thanks to the work of him and his colleagues, many millions who would not otherwise have survived are alive today.

David France’s award winning documentary How to Survive a Plague, which captures Staley’s work with the direct action activist group ACT UP, will be shown at SPACE Gallery this Friday and Staley will be there to present the film. The event is co-sponsored by the Frannie Peabody Center. My great friend Jon Courtney, SPACE Gallery co-founder and Films Director, reached out and asked if I would be writing something about the event, not because he thought it needed publicity, but because Staley is a personal hero of his.

I spoke with Staley by phone earlier this week.

Note: SPACE Gallery is also showing the film on Saturday and Sunday, though Staley will only be present at the Friday screening.

This film reflects on 10 very intense years of your life. It must be interesting and somewhat odd to relive what had to have been an incredibly visceral time for you.

For all of us in ACT UP, seeing this history as it is portrayed was difficult. It is thrilling and exciting because we want our history to be remembered, but a lot of us… I know I put this entire period on kind of an emotional shelf and found it almost too painful to look back and didn’t even remember that so much had been filmed in such a stunningly beautiful retelling, it really captured the emotional roller coaster that we rode for upwards of ten years with the ups and downs, and thinking we had achieved great insider status and making great progress with the government only to see the science collapse around us as the waves of death getting bigger and bigger every year. And finally this stunning change in the treatment front that came and changed everything in the developed world from then on in.

It was hard to relive that. When I was watching it, I was seeing all of these people that I hadn’t thought about in a while who are no longer here. It was great to see their work acknowledged, as it brought them back to life in a way.

As you noted, many of the people who appear on screen are no longer here. Is that the brunt of the reason why you put this on an “emotional shelf,” or was it because the overall time was so overwhelming?

Both. It was mostly about how many we lost, but it was also because some of the activism was painful. The split between Act-Up and TAG—it doesn’t quite come through in the film because not a lot of time is spent on it—was incredibly painful for everybody involved. Many of us had really burned out as activists around 1996 and then to just go year after year and watch this history fade away where no one really wanted to talk about it or talk about AIDS—the whole shebang just started to really gnaw at you, so you would kind of avoid it. You would look to the present and future because the fact that the past was being ignored was very frustrating. That’s why there were very mixed feelings. There is a lot of happiness about this is happening. Finally our story will be told and our history won’t be lost and next generations can see what many of us thought was the gay community’s finest moment, which set up a lot of what followed. So there are a lot of mixed emotions and they are still playing out.

Is there anything about the period that has become evident in the retrospect made possible by watching the film?

The scope of it all. After [that time] was over, you compressed it all, and forget how long that struggle was. It was 10 years, so you kind of forget the roller coaster and you are filled with pride by the fact that the community kept that fight going. I am so glad [Director David France] didn’t focus on 2 or 3 years and that he really tried to cram 10 years in there in a way that is digestible to audience. And it is true to what we lived through. You really do relive all of those emotions that occurred during that 10 years, the good, the bad, the painful and the beautiful. And also the humor. One of the things that kept the movement going was our love for dark humor. You really can’t do work like that without that perspective. Maybe it’s part of the Gay Gene to be able to have that kind of attitude in almost any situation [laughs], but there was a lot of fun as well. There were just amazing friendships. I can’t say I ever want to have the dark years of the AIDS crisis—the plague years—happen again in this country, but many of us thought of it as one of the most beautiful times in our lives as far as friendships, community, love, courage and achievement. I felt a great sense of pride watching it all.

When I went to elementary school, our only exposure to the fact that AIDS existed was being shown The Ryan White Story, and there was no acknowledgement of homosexuality or the gay community. I am curious about the response of young people to the film, as I would presume that many are learning of your history for the first time.

Oh, constantly. And not just young people. The dividing line tends to be around 45 and younger. That group definitely knows about the AIDS crisis, but if they didn’t live in New York, they just weren’t as aware of the role of treatment activism, ACT UP, TAG, and how huge that was, especially our first five years. We dominated media stories and were easily the most prominent social movement at that time, but it was a short period before the press started to get used to us and we were staging so many demonstrations that it became rote. There was a good few years, though, where we were a major story on 60 Minutes and Nightline. Everyone was appearing in profiles and we were on the covers of the New York Times and the Wall Street Journal for attacking pharmaceutical companies, so we made a huge, huge splash, but people forget their history pretty quickly in this country and it takes a while before people start looking back. I think we saw this with people taking a while to look back on the Vietnam War, and there was a long time before the main body of stuff started to get written about the Holocaust, not that those were ever being lost to history like this period was. It is time now, and I hope that it is the first of many looks back because this is only a small segment of what was happening then.

I grew up in the 90s and so I can’t fathom what was happening in the 80s. I especially can’t fathom this idea that the gay community was more or less written off where you were on your own with this plague. That seems just so terrifying and isolating. How do you think, strategize and just not freak out in such an organized faction that you can gain so much traction that you establish a functioning movement?

Well, a ticking clock is an amazing motivator and it really focuses the mind. To be that hated and left for dead like that by almost every institution in the country that you grew up respecting certainly was the spark for ACT UP. It was 6 years of various emotions starting with overwhelming fear and eventually morphed into a burning anger of indignation where if we didn’t do something soon, we were all dead. With that clock in front of us, all of us thought that we only had two or three years to do the work and so we really focused on that old civil rights expression, “By any means necessary.”

Frankly, if it meant terrorism we would have been a terrorist group, but we were smart enough to realize the political context we were working in and the quickest way to get change was to guilt-trip the powers that be and that’s the strategy we pursued. It really paid off. The polling numbers started changing radically after 1988 after the big FDA demonstration. There is a fascinating, very long-term Gallup Poll about whether homosexuality should be criminalized, the act of it. In one year, between ’87 and ’88, it had an 18-point swing where the lines crossed and it stayed where people said no, it shouldn’t be criminalized. We showed the country and gave them a very different picture of who we were. We may have pissed some people off, but gained in the general sense an overwhelming respect for how we were caring for our own, the courage we were showing, how we were fighting back, and the dignity we were showing.

That’s what ultimately led to huge increases in the NIH budget, forced down Reagan, and forced down Bush I and carried through with Clinton. Those dollars, which we got up very quickly from almost zero to $2 Billion a year are ultimately what changed the picture on the treatment front and created almost 30 AIDS drugs which are now on the market, and the combinations thereof that save lives today.

About Alex Steed

Alex Steed has written about and engaged in politics since he was an insufferable teenager. He has run for the Statehouse and produced a successful web series. He now runs a content firm called Knack Factory with two guys who are a lot more talented than himself.

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Alex Steed

Alex Steed has written about and engaged in politics since he was an insufferable teenager. He has run for the Statehouse and produced a successful web series. He now runs a content firm called Knack Factory with two guys who are a lot more talented than himself.